My thoughts, and opinions on many subjects. But it's always a mad world.

Updating Tuesdays, and Saturdays, with a video blog the last Thursday of each month (Most of the time anyway). On Sunday I roll over, and go back to sleep.

So Who is Amanda Harper?

Well to start with I'm obviously a writer, though of everything from very alternative romances to crime dramas.

I'm a lesbian, trans-woman in her 30's, who is very much into her royal blue hair (now purple), velvet and leather filled wardrobe and of course my oversized shit kicking goth boots. Oh, and I'm a hardcore PC, and tabletop gamer.

In this blog I want to hit on subjects that I don't have another medium for. Expect reviews of games old and new, though mostly old. Expect rants about the world in general. Expect the occasional lapse into convoluted personal philosophy. Oh and definitely expect some stuff on BDSM, after all I was a professional dominatrix for a few years and enjoy the BDSM lifestyle in my private life now.

So I hope you enjoy the randomness of my ruminations, and let the madness commence.

(Please feel absolutely welcome to comment on any and all of my posts. I have only three rules...
1: avoid Godwins rule.
2: avoid bad language.
3: I'm not here to provide free advertising to commercial websites, comment if you wish but I will edit out links post to such sites.
Other than that enjoy yourself, and please feel free to have a pretty signature.)

A follow up to being a friend to the owner of Angry Bowel Pixies.

Back in March of this year I wrote an article about being a friend to someone with a chronic illness. In it I covered ten things which I feel make for a wonderful friend to have if you suffer with a chronic ailment. But the past week has brought to mind something which I think should probably be folded in.

During the past week in addition to all my usual physical problems, the universe saw fit to give me the gift of a kidney infection. The key words in that last sentence were “in addition to.”

Everyone has their own normality. What’s normal for you might well be completely unusual to me. My normality is to be a polyamorous, BDSM living, purple-haired, computer gaming ,futagirl, try saying that five times fast when you’re drunk. But my normality is also to always feel like I have the worst food poisoning you’ve ever experienced, combined with a migraine that starts somewhere in my throat, and ends at my anus, and to add extra insult to injury constant muscle and joint pain. This is what I feel, to varying degrees of severity, essentially every moment of every single day of my life. That is my normality, and I’m very, very good at hiding it from people.

But as sick as I feel all the time, I can still get sick. I can, and do still catch colds, catch the flu, get hay fever in the Summer, develop migraines (in my head), and of course I regularly get some truly vicious kidney infections.

The thing is, most people who are chronically ill will create their own type of normality. They will create a life they can live with. It may not be particularly fulfilling. It may not be easy. But they will create one, and that life is what will be normal for them.

My normality is to spend an awful lot of time in bed from sheer exhaustion after doing minor things, like hoovering. It includes things like always flushing the toilet before I use it, just in case there’s bleach in the bowl (burning badness). Spending most of most days sitting quietly because it hurts too much to do anything else. And making sure I can always reach the toilet in time based on how I feel at a given moment, and believe me after 30 years of this I can often time, almost to the minute, when an attack will hit me. Normality also includes one usually random day most, though not every, week where for a few hours I can pretend to be normal. When I get to go to town with one of my friends. Or go out for a meal. Or…just be a regular woman in her 30’s.

But that normal life doesn’t include kidney infections, and all the extra pain, weakness, and that rotten sickly feel they bring.

Normal doesn’t include a pain in my head so bad that I feel like I would gouge my eyes out with my own fingernails for just a few moments relief.

All of this is to explain something which you should never, EVER say to or about someone who is chronically ill.

If you’re lucky enough to be physically robust you probably take that for granted. You probably take your normality for granted. And when you get the flu, or a cold, or a migraine, or…well anything, you’re probably insufferable. It’s the bubonic plague, and no-one’s ever been that sick ever in the history of history. And that’s fine, you’re entitled to feel that way when you’re well, and you’re entitled to feel sorry for yourself when you’re not.

But when you say something like “God, she’s always sick.”, to or about someone who is chronically ill, you’ve probably just punched them in the heart with something they’re probably fighting everyday to hide from the world. I know I don’t want every person on the street to see that I’m in agony, I want them to see a strong, healthy, good-looking woman. I don’t want the world at large to see a woman who sometimes has to crawl up the stairs because she hasn’t the strength to walk up it.

When you say it to or about them when they’ve gotten sick, in exactly the same way you do, but while they are still coping with everything else that they always have to cope with…that’s just about the shittiest thing you could say. And if they’ve heard you saying it, you probably turned a really bad day into a day that might make them wish they’d never been born.

I’m lucky, all of my friends are amazingly accepting, supportive, and understanding of what normality means for me. But I have had these things said to me. I’ve had the flu, and had someone say “Well you’ll be fine, you’re always sick.”

Why yes I am always sick. Thank you so much for pointing that out, and reminding me that even when I get rid of this flu, and I’ve gotten back to my version of normal, I’m still going to feel like hammered shit. Every. Single. Day.

Oh, and thank you for being so understanding of the fact that while I may be sick all the time, I don’t have the flu all the time, so I don’t have any way to cope with it, you know the same way you don’t…I hope you catch it off of me you insufferable prick!

What I’m saying is don’t do this to people you know who are chronically ill. Try to understand that they have their normal days, which may be loaded down with pain, and discomfort, with disgusting discharges, and worrying about whether they’re going to humiliate themselves on the bus. But that even that normality, just like your normality, can be made so much worse by catching something as simple as a stupid bloody cold, or a bad-tempered kidney infection. Because I don’t care how sick you feel to start with, nothing is made more bearable by feeling like you’re urinating razorwire, that’s been coated liberally with chilli powder.